Monday, August 09, 2010

Autism Speaks Supports More Environmental Research? Terrific! Now Please Help Even Out the Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Dr. Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute

I have been a supporter of Autism Speaks over the course of its brief existence. I appreciate the media savvy and political skills of its leadership. The World Autism Awareness Day that it assisted in bringing into existence is, in my humble opinion, a great accomplishment in itself. The connections and skills of Autism Speaks leadership have been very impressive in bringing in people and events who, by themselves command attention, from NASCAR to Jerry Seinfeld, people and events that are seen and heard focusing on autism. Well done, very well done.

I have though been concerned, rightly or wrongly, about what I thought was a subscription by Autism Speaks to the "it's gotta be genetic" mindset which has dominated autism research and hindered progress in understanding autism disorders and developing treatments and cures. I was pleasantly surprised when I received from Jane Rubenstein of Rubenstein Communications Inc. the Autism Speaks statement "HEARING ON STATE OF RESEARCH ON POTENTIAL ENVIRONMENTAL HEALTH FACTORS WITH AUTISM AND RELATED NEURODEVELOPMENT DISORDERS U.S. Senate Committee on Environment & Public Works, Subcommittee on Children’s Health". In the statement Autism Speaks Chief Science Officer Dr. Geri Dawson states unequivocally Autism Speaks endorsement on the need for more environmentally based autism research:

(NEW YORK, N.Y., August 4, 2010) – Autism Speaks’ Chief Science Officer Geraldine Dawson, Ph.D. emphasized the importance of research on environmental risk factors for autism spectrum disorders as the U.S. Senate Committee on Environment & Public Works, Subcommittee on Children’s Health convened a special hearing yesterday on potential environmental health factors associated with autism spectrum disorders (ASD) and related neurodevelopmental disorders. The hearing examined the latest research on potential environmental factors that may increase the risk for autism spectrum disorders.As this hearing reviewed studies funded by the Environmental Protection Agency and the National Institute of Environmental Health Sciences on environmental factors associated with autism, including toxins and other factors that can influence brain development, Dr. Dawson reiterated that it is important to remember that, “Although genetic factors clearly contribute to the causes of autism, we also need to understand environmental factors and their interactions with genetic susceptibility.”

Dr. Dawson's statement includes examples of what appear to be impressive initiatives undertaken by Autism Speaks in support of environmental autism research. The links to review these initiatives can be found on the Autism Speaks web site, science section. What isn't clear is the level of financial commitment to environmental autism research compared to genetic research. Does, or will, Autism Speaks commit to balanced funding of environmental and genetic autism research as called for by Dr. Irva Hertz-Picciotto of the UC David MIND Institute?

If I have wronged Autism Speaks with my perception of an imbalance on its part in favor of genetic over environmental autism research I would genuinely appreciate being notified of my error. If that is the case then I will apologize but would humbly and respectfully ask Autism Speaks to use its proven and impressive communication skills to convince public health funding authorities to follow the approach recommended by Dr. Hertz-Picciotto.

Much valuable time has been lost with the autism is genetic obsession.

Balanced funding of environmental and genetic autism research is needed now, not tomorrow.

Balancing the funding of environment versus genetics should not be worried about until the imbalance of autism speaks' funding neurodiversity concerns is eliminated. Dr. Mottron will undoubtedly try to renew his half a million dollar grant when it expires next June.

Also, the funding of some neurodiversity kids in their early 20s who are barely affected by their autism if at all for making some films for fun should be stopped.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

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Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.